I have always been a creature of habit. I find a lot of comfort in the familiar. I make schedules and to-do lists. I have a routine. And I like that. Some might say I have a bit of a “Type A” personality – I prefer to call myself a “planner.” :-) Knowing what to expect makes me happy. Because when I don’t know what to expect, I worry. A lot. My mind tends to go to “worst case scenario” immediately. So I compensate by trying to organize my day as much as I can and plan out as many details as possible. I’ve joked that this is why God made me a Navy wife – because there’s always something changing, whether it be orders to a new location or a new assignment. But if I’m being honest, even that “change” is organized because it doesn’t happen immediately – we’re almost always given months of lead time to get ready and prepare. But up until January of this year, that was how I thought God was “stretching” me to help me to stop trying to control my own surroundings and lean on Him more. I didn’t really know what it meant to lean completely and totally on God until this year – January 12, 2012, the worst day of my life.
That was the day I found my son Colton, then 13 months old, limp, unresponsive, and barely breathing in his crib.
Colton had been acting fine that morning. I put him down for his normal nap at noon and he woke up early – around 1:30 when he typically sleeps until 2:30. He was acting cranky and tired and he had a very slight fever – 99.5. Barely a fever at all, but enough to explain to me why he wasn’t acting like himself. Because he was acting so tired, I decided to put him down for another short nap – just an hour to lie in his crib and help him get some much needed rest. I planned to get him up in an hour because I didn’t want him to have trouble sleeping that night. So I put him down at 3. I have a video monitor, so I was checking on him during that hour and he appeared to just be sleeping, and I was grateful he was getting some rest. At 4, he hadn’t woken up on his own so I went up to get him. I walked in his room and as soon as I saw him, I knew something was wrong. His eyes were cracked open, but he wasn’t focused on anything. He had mucus all over his face and the sheet below him was soaked – with what, I didn’t know (it was clear, so I wasn’t sure it if was sweat or mucus or what). I picked him up and his head rolled to the side and his limbs were limp. I called his name and he wouldn’t focus on me. I heard him breathing, but it was shallow and raspy.
I’ve always thought that in an emergency, I would be someone who would snap to attention and focus and be able to do whatever I had to, especially if my children’s health was in danger. That didn’t happen. I was in a fog, a state of disbelief. I knew something was wrong with Colton, but I had no idea what to do. So I held him close and ran from his room. My older son, Cayden, was watching a movie and so I yelled to him that I was running next door (we live in a townhouse) and to stay on the couch. My next door neighbors, Mitch and Jenny, were a fellow medical school family, and good friends of ours. I banged on the door and Jenny opened and I said “something’s wrong with Colton. Is Mitch home?” and she could tell immediately that this was really bad. She yelled up to Mitch and he came running down. Jenny ran over and got Cayden and had him come play at her house with her kids, which he was happy to do (he was blissfully unaware of how serious things were with Colton). Mitch helped me lie Colton down on the ground and we undressed him and tried to get him to focus. He wouldn’t, and Mitch asked if I’d called 911. I said no I hadn’t – I didn’t know if it was that bad…which just shows that I was in a complete state of denial that this was happening. 911 was for severe emergencies, and my precious son couldn’t possibly be the one in a severe emergency!
Mitch took Colton’s temp rectally – 101.5. We stripped him naked, and Jenny ran out and flagged down another medical student in our community, Matt, and he also came running over to help while we waited for the ambulance. Mitch and Matt were trying to tilt his head back to help open his airway. Mitch told me later that he was having a hard time hearing Colton breathe. The ambulance showed up soon after and the EMT came up to the house and leaned down and picked up Colton and carried him off without a word. It was horrifying to see my child lying naked, limp with limbs dangling, being carried off to an ambulance. I ran along asking questions and the EMT told me to get in the front of the ambulance because they needed room in the back. It was terrifying to be so far away from Colton, to watch helplessly as they strapped him down and hooked up tons of tubes and wires and covered his little face with an oxygen mask.
As I got in the ambulance, sobbing, Jenny told me she’d called Dan (my husband) and he’d meet me at the ER. Mitch said he was going to follow the ambulance to the hospital and would stay with me until Dan arrived and Jenny would keep Cayden for however long we needed. Mitch told me later that he wanted to stay with me because he didn’t know if Colton would make it to the hospital – his breathing was that bad. He didn’t want me alone to face that, if that was the case.
When we got to the hospital, Colton was quickly whisked off to a room where a team was waiting. When they wheeled him in, it was chaos – people talking over each other, wires and tubes flying everywhere. The ER doctor in charge quickly took command and yelled out for everyone to shut up and listen, that he didn’t mean to be rude but that he was in charge and this was what they were going to do. He immediately starting giving out commands and I was so grateful to see someone who had a plan and knew how to get everyone involved in Colton’s care to work together. The doctor saw me and came over briefly and said “I know you must be scared. Let me do the lifesaving stuff first, and then we’ll talk.” I nodded faintly…lifesaving stuff?! Colton needed lifesaving stuff?! I still couldn’t wrap my head around what was happening.
Those first few minutes in the ER are a blur – I just remember lots of wires, machines, and medical personnel working hurriedly on my baby boy. Dan arrived soon after I got there and he said he came back to the room to see a code being performed on Colton – as Dan calls it, “stopping someone who’s trying to die.” I was told later that when Colton arrived, he was breathing once every 20 seconds on his own.
He was sedated and stabilized and Dan and I were brought in and brought up to date. We were told that Colton was okay and stable, but now we had to run a ton of tests to find out what was wrong. We had to check for tumors, for cancer, for meningitis. He had a CAT scan, a lumbar puncture, 3 chest x-rays, and several blood tests. He was kept sedated for 7 hours while these tests were run and we were awaiting transfer from the local hospital close to our house to Walter Reed, the military hospital where we were to finish our care now that Colton was stable.
It was the longest night of my life. I felt so helpless, so out of control, so powerless to help my precious baby boy. I was told he was stable, but I was so scared that he wouldn’t be “Colton” when he woke up. I didn’t know how long he was having trouble breathing, and if that would cause any permanent brain damage. I just kept praying over and over “please Lord, please let me keep my sweet son. Please don’t take him. Please let him BE him.” I was encouraged by how I could tell when the sedation was starting to wear off because Colton would start to twitch – I could see he was fighting to wake up. He wasn’t allowed to come off sedation for hours because he needed to stay sedated for the hospital transfer and all the tests, but it was a relief to see a bit of his strong personality coming out. That gave me hope.
After a 3 day hospital stay, Colton ended up being diagnosed with having a febrile seizure and was released. Febrile seizures are when your temperature rises too fast for your body to handle and the result is a seizure. They’re relatively common in young children and most outgrow these seizures by the age of 5 or 6. They are harmless to the child, just scary to witness. And 70% of children who have one will never have another. I clung to that last statistic.
So for months, I would check on Colton constantly while he was sleeping. I watched him like a hawk, but really tried not to hover. I knew this condition was too big for me to even try to control, and so I gave up trying. I would pray over Colton constantly, whether in person or over the video monitor while he slept. I reminded myself constantly of how God had brought us through his seizure, and I could feel Him with me as I struggled to come to terms with my fear of fevers and recurrent seizures. He had fevers – lots of them, and each time I was on pins and needles monitoring him. But he was fine through every one, and I started to doubt the febrile seizure diagnosis. No one had seen what had happened, so maybe he didn’t really have one. Maybe something else caused his aspiration. I started to relax a bit with how much I worried about his condition.
Then in November, 10 months after the first seizure, Colton had another one. This time, it happened in my arms. He woke up from a nap with a very slight fever – 100.5. I brought him downstairs and tried to give him Tylenol. He didn’t want it, so I tried to force it and he vomited it right back up on me (he has a sensitive gag reflex, so I chalked it up to that). I was holding him and sitting on the couch trying to comfort him when I heard his breathing change. I pulled back a bit to look at him and I noticed his eyes had rolled up into his head and he started twitching and jerking in my arms. I panicked – what did I need to do?! Did I need to hold him, or should I put him on the ground? The fog of disbelief took control of me again and I fought against it, trying to focus. I grabbed my phone and called 911 and asked for an ambulance. I was petrified he’d have trouble breathing again. The seizure lasted for 30 seconds and afterwards, Colton was limp and unresponsive again, though he was breathing. While still on the line with 911 and waiting for the ambulance, I called for Cayden and kept holding Colton and brought them both next door and again pounded on Jenny’s door. She knew something was wrong – again! – as soon as she saw me and I told her Colton had had another seizure. So it was déjà vu again – Cayden stayed at her house to play while Colton and I rode in an ambulance to the ER. Jenny met me there (Dan was away in PA for a military training exercise) and Colton was checked out, dosed up on Tylenol, and released a few hours later.
So at least this time I knew Colton definitely had a febrile seizure. Since it happened in my arms, there was no doubt. I left the hospital feeling a little overwhelmed, but grateful that I at least knew for sure what was happening. I thought Tylenol would be my magic bullet for warding off fevers and resolved to dose Colton up as soon as he started acting off. I got Tylenol suppositories as well, in case he refused to take oral meds, and prepacked Tylenol in my purse, diaper bag, and all over my house so I’d always have it available. I felt better with my plan.
Less than 2 weeks later, Colton was playing around the house and suddenly ran up to me and wanted to lie on me. That was abnormal for him and a big warning sign to me. So I tried to give him Tylenol, and he again refused, so I gave him the suppository. With Tylenol in his system, I thought he was in the clear for having another febrile seizure. So I was shocked when fifteen minutes later, while I was holding him, he seized again. This time, it lasted for over 2 minutes. I didn’t call 911 this time – I was able to focus and I knew what to do. I did call Mitch and Jenny again and Mitch ran over to sit with me while Colton seized and was able to help monitor his breathing and check his vitals afterwards, and Colton was okay. Still, I was a bit shell-shocked as I hadn’t expected another seizure so soon.
Dealing with these febrile seizures has become a “new normal” for me. It’s rattled me, to be honest. There is no history of seizures of any kind in Dan’s or my families, so this came out of the blue for us. It shakes me to my core to be so helpless as I’ve seen Colton through each of his episodes and tried to monitor him for the time in between. Even when I’ve tried to plan and arm myself with what to do, I’ve learned that it isn’t always enough and sometimes the seizures still happen. For a planner like me, that’s hard to handle – especially when it’s the health of my child that stands in the balance. I now know what it truly means to be “stretched,” to lean fully and completely on God. I know what it means to surrender any sense of control and to just trust. The term “leap of faith” comes to mind, because that’s what it’s been for me. I feel like I’m jumping out into darkness and trusting God with my most precious thing – my child. And He’s caught me and held me, and held Colton too. Throughout all three seizures, I have felt God’s presence, and I am so grateful. It’s like He knows how terrifying it is for me to let go of a “plan” and see how helpless and powerless I truly am – and He comes alongside me and allows me to feel His presence as He guides me through. I'll never forget my complete horror and panic at finding Colton how I did after that first seizure. But as I look back on it all, I can clearly see God's hand guiding Dan and me through the horror. There were so many little things that He put in our path to let us know we weren't alone, evidence of His faithfulness and love in bringing us through such terrifying times:
The timing of it all was perfect. If it had to happen, this was the absolute best time for it to happen. I almost never wake Colton up from naps - I always wait for him to wake up on his own. But since this was an "extra" nap, I had an ending planned for it. If it had happened during his regular nap, I wouldn't have gone to get him. I would have let him "sleep" thinking he was just extra tired from being sick. I shudder at the thought of what could have happened had I not found him as early as I did. Especially since he just looked like he was sleeping on the video monitor.
Mitch and Jenny weren't supposed to be home the first time. They were supposed to be a nearby park. But their daughter took a longer than expected nap, so they decided to stay home. Most of my neighbors had gone to the park that afternoon, and we stayed home because Colton had a fever. I am so so grateful that Mitch and Jenny stayed home too!!! My neighbors were amazing in providing immediate support for me and for Cayden. They took him in, accompanied me to the hospital, sat with us at the hospital, organized meals for us, and rallied around us in prayer.
Dan was able to contact our pastor and he set into motion a huge prayer chain. We were getting messages from tons of people at our church letting us know they were praying for us - several of which we were like "how did they know?!" We're so grateful so many people were prayer warriors for our precious little boy.
God kept putting people we know in our path. I told Dan at one point "I feel like we're surrounded by angels." SO MANY PEOPLE crossed our path that just went above and beyond for Colton. Both ambulance crews were great, we had great care at both hospitals. Once we got to the Navy hospital, we saw so many people that we knew from start to finish. Dan just finished his pediatric rotation there, so he knew a lot of people who were working with us. The fourth year med student who was assigned to Colton's case was the husband of a friend of mine. We really felt that personal investment people had with Colton. He wasn't just another case file or just another patient - he was Dan's son, he was my son, he was a real person and everyone was on his side working hard to get him better and get us home.
Colton's primary care doctor is also Dan's mentor, and he was away on vacation when all this happened. Dan texted him to let him know what was going on while we were at the first ER and he immediately called the ER to talk to the doctor in charge about what was happening, and then kept in touch with Dan throughout the rest of the 48 hours.
The ER doctor was amazing. He had undergone some extra pediatric training (I remember him telling us his training and while I'm fuzzy on the details, I remember him listing off several "extra" pediatric training he'd done) so he was truly an expert to handle Colton's care.
The Children’s Hospital transfer team who brought us from the first hospital to Walter Reed had a unit number of 707. Seven is my favorite number, and seeing “707” immediately brought such comfort to me – I equated it to a “wink” from God, letting me know He was there with us. It was such a little thing, but it meant so much.
So many people dropped everything immediately to rush to our aid. Dan’s brother Matthew dropped everything after the first seizure and immediately left work, got his fiance Holly and they drove 4 hours up here to take care of Cayden while Dan and I were with Colton at the hospital. My dad and brother were in Florida for a work show and they altered their plans to stop here on their way home to see us. My mom got up early Friday morning to drive up here and be with us and help take care of things at home so that I could focus solely on Colton. My neighbors planned out meals for us for the next 5 days so I didn't have to worry about getting to the grocery store or figuring out what to make for dinner. And so so SO many people were praying for us. We didn't have the mindset or the time to contact lots of people to pray for us, but word spread rapidly. I am so humbled by all the prayers we received, and so grateful. PRAYER WORKS.
So while I definitely can’t say I’m “comfortable” with dealing with febrile seizures or that I’m free from fear of them, I can say I’m at peace with it. My pulse still races when I hear a playmate of Colton’s has come down with a fever and I know I have to be especially on guard. But I trust that God is ultimately in control, and that Colton is His son too. And I’m learning that even though it’s terrifying to me to be completely powerless and have no control over what’s happening, it’s also a beautiful place to be because that’s when I’ve gotten to experience God’s power and grace at work. I’ve learned that leaning on Him completely doesn’t mean I’m out on my own. I know without a doubt that when I lean, God holds me. And while it’s still scary, it’s a pretty powerful place to be.